Young Adult Metastatic Vaginal Cancer and life after

Tag: Chemo brain

The Recovery

So lets talk about what happens with your life after cancer, how it can still affect you well after treatment, when your’re trying to move on and pick up all the pieces after all its destruction!

I’m just writing it as it comes so I apologise if it goes off in places. I guess I’m using it today to vent my frustrations… that’s the whole point of this, isn’t it? It’s just an open diary that everyone can read!

As I’m sure you can tell, I’ve been getting my life back. Day trips out with friends, weddings, festivals. Anything I wanna do, I do, I have over 18 months worth of life to catch up on, you know!

A selection from Truck Fest at the weekend

Cancer Fatigue

Today I am tired. Down to my bones, dog tired. When I get like this It’s hard to move. Everything is sluggish. My movements, My brain. It’s a big self-pity fest and I fucking hate it. I get emotional and cry over the stupidest of things. That just pisses me off more. I am not an irrational person.

The worst of being fatigued is when I get like it my head hurts again. Not headaches I mean the hair follicle pain that I talked about before in Hair today, Gone tomorrow is back. It’s just constantly sore. I can’t touch it, sleep on it and when it’s at its worst wash it. It’s only in patches, running from ear to ear, on what I call my grandpa line. But it stops me from wearing my scarves and headbands for long periods. As you can probably tell from recent Instagram pics it’s growing fast, and up! So I’ve been using headbands to keep it up in this heat.

I’m finding I’m very forgetful at the moment too. I can quite literally be in the middle of a conversation and it’s gone. Or some one can tell me to do something and I’ve forgotten.

We’ve got builders round at the minute and I had to be told repeatedly what the orders of drinks were… and I don’t mean after a few minutes! I mean I was told, instantly forgot, told again, forgot, retold, forgot it’s enough to pull your own hair out! Hurting follicles or not!

Don’t even get me started on today. Working on my laptop, I got up to make said builders a drink (don’t worry, it’s written down now!) and came back to find my glasses. I actually had an “oh shit” moment checking to see if I have become that person who leaves them on their head and walks around aimlessly! But no! I could not find them anywhere! I even went upstairs to find them knowing full well I hadn’t been up there!

Turns out Hugo nicked them and they were down the side of the chair!! How the hell he was so gentle with them beats me but things like this actually makes me feel like I’m going mental… apparently he’s not on my side in all of this!

I’m just frustrated because I feel like I’m being punished for every time I go out and have fun. It’s like a constant “ah ah ah, don’t forget I’m still fucking here!”. I know I can’t expect to escape all this scot-free. That the things I have been through is life changing and most probably damaging to my body. But all I want is a fucking break from it!

It could be possible that within time, the aches, pains, emotional despair and self-pity will ease. If you catch me on a good working day, then I’m good. I’d say I’m like 85% back to my normal self.

This is not going to be a long post today… to be frank, I just can’t be bothered. Any suggestions to help with sore hair follicles will be greatly appreciated. Over the counter painkillers, showers and scalp massaging does not help.

Dirty Old Brasstards – This was a nice little discovery we made when we were trying to avoid the rain on Friday night.

I think this one will be about how chemo makes me feel. It’s a difficult one to explain but also it might be something that not everyone feels when they have chemo. This is my reaction to the drug. And it’s difficult to explain when the effects have worn off because I try my hardest to remember how it makes me feel but at the time that’s all I feel but when I’m better I forget. Sounds crazy, right! But everything is so easily forgotten when you feel better.

So there is a thing called chemo brain. And I guess that is what I’m suffering with at the end of the day but that’s not really what I thought it would be called. Chemo brain sounds like you’re forgetful or it affects your mental ability… And I guess in a way it does. But my experience is nothing to what I imagined.

So the day of chemo my reactions are all pretty immediate. I generally get a huge dose of antihistamines, which is basically a syringe full of Pirton. This is to help my body cope with the chemo paclitaxel… You know, first time anaphylaxis. This prevents any reactions occurring but it also makes me very very drowsy. So pretty much for the day of chemo I’m in and out of sleep. It’s a great way of killing an 8 hour day but it still drags… And my poor mum still has to suffer through it along with me.

One of the first things to change with chemo is my taste. This doesn’t normally last. Just for 4-5 days. I’m not sure how I can explain it, it’s like I’ve got wax in my mouth or my mouth is all cotton wool like, I can’t taste flavours as well, and things aren’t as appealing. I struggle to eat meat at this point coz the texture of it can be very off putting.

Followed closely from the tastelessness is the nausea. This is probably a big factor to the chemo reactions. As I suffer with nausea this means that my appetite reduces. It’s tough to find what I fancy to eat and I try so hard to eat what’s good for me. I have 4/5 different types of anti-nausea pills which help combat any actual sickness but it makes my mouth even more woolly and changes tastes even more.

Chemo affects you mentally too. I go very spaced out for a few days. I find it better on these days when people don’t talk to me. It sounds so silly but I find it so hard to concentrate on texts and function on what I should be saying. It sounds so crazy, right! It’s like there’s a massive fog over my brain that prevents me from focusing properly on what I should be doing. I zone out easily. I literally become some sort of chemo zombie. I don’t just think it’s in my head though. It weirdly affects my eye sight. Not in an awful way and it only lasts for about 3/4 days after and then I’m fine I just get this ring of haze around my sight and this makes focusing difficult. It’s like my brain just gives up trying to focus on what I should be doing.

I become a ghost to any social media and friends seem to know they won’t get a lot out of me on those days.

It all sounds so awful what I have to deal with when you say it out loud but you just have to deal with it. This is my life. If I want to be better then I have to deal with these after effects.

I have to apologise in advance for this post too. I’m still very foggy headed this morning so this post has taken me longer than usual to write and I’m sorry if it drags off in weird directions or doesn’t make much sense! It’s a real life struggle for me this zombie brain thing but it’s easier to explain when you’re actually mulling yourself through it then if I write it in a few days time when it’s a distant memory.

Stand Up To Cancer

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